5. of care that would provide state of the art care in rural
areas, increase the access to care, generate services and
revenue for both the rural and academic center, train
health care professionals [5], and serve as a laboratory
for intervention. (Table 1).
The RCOP has grown from one program in 1988 to
five programs operating at five rural hospitals. Briefly,
the majority of cancer care is provided at the rural
hospital. A team of two – three oncologists and two
nurse practitioners or nurse clinical specialists travel to
each site weekly. While there, they see new consulta-
tions and patients under treatment. They work with
primary care doctors at the rural sites who have ex-
pressed an interest in care of cancer patients; this
typically includes two – three surgeons and two – four
primary care internists or family physicians. Nurses
from the rural site come to the academic center for
specialized cancer nursing, then receive annual updates.
Many of the rural nurses have become certified in
oncology nursing.
The program is administered by the Massey Cancer
Center of the Medical College of Virginia, Virginia
Commonwealth University, and each of the rural hos-
pitals. Support for this program comes from the Com-
monwealth of Virginia.
3. Program analysis
3.1. Impact of the program on the clinical care
pro�ided
We have analyzed three important index conditions
in our first two rural hospitals [6]. We chose these
6. conditions because there was documented wide varia-
tion in practice, and poor medical outcomes if optimal
process was not followed (Table 2). It was difficult to
Table 1
Goals of the rural cancer outreach program
Goal Comment
Virginia is typical rural USEstablish a model of care for
staterural Virginia
Deliver state of the art care in See what care could be
delivered at the rural site,rural areas
what should be centralized
Increase access to clinical trials Allow access to new drugs;
increase accrual to clinical
trials for the academic center
Train health care professionals Help recruit and retain
primary care and specialist
physicians and nurses for the
rural area. Provide a specialty
service that makes rural
practice more attractive
Link academic and rural Make regional policy, not
hospital against hospital, tohospitals in strategic alliance
solve problems of indigent
care.
Help support unprofitableHelp finances of both hospital
partners small rural hospitals.
Use the program for tobaccoServe as a entry point for
7. community based interventions and nutrition interventions if
desired by rural community.in prevention
L.J. Lyckholm et al. / Critical Re�iews in
Oncology/Hematology 40 (2001) 131 – 138 133
Table 2
Level before RCOPIndex condition Level after RCOP
Morphine use in chronic pain 0 +500%
60%�20%Breast conserving therapy
9Clinical trial accrual 0
Adjuvant therapy for early breast Unknown. Probably high for
affluent patients Offered to all patients regardless of ability
who could travel, low for the poor to paycancer
analyze the type of care because the volume of any
one condition, e.g. use of adjuvant chemotherapy in
Stage I – III breast cancer, was always low and usually
less than ten cases per year. However, the importance
of high quality care to those individuals is as impor-
tant as in other settings. There is often reluctance to
analyze care patterns if it is likely to show less than
optimal care; for instance, a hospital that reports ex-
cess mortality from routine myocardial infarction may
find that patients avoid that hospital for all cardiac
care, especially troublesome for a small hospital that
depends on retaining a large percentage of its market
for survival. Also, there is often no financing avail-
able to support an in depth look at practice patterns
and survival or recurrence.
8. The use of morphine for cancer pain was studied in
one hospital. In the preceding 3 years before RCOP,
there had been almost no morphine prescribed; within
2 years the amount of oral and intravenous morphine
increased by over 500%. In addition, the use of mepe-
ridine declined. Breast conservation, considered the
desired treatment for early stage breast cancer, had
been rarely used before RCOP. By the 3rd year of
operation at our first hospital, over 60% of patients
were routinely treated with breast conservation. In
addition, before the RCOP, all breast cancer patients
were not routinely offered adjuvant treatment, be-
cause many could not see an oncologist due to dis-
tance or cost. In other studies, the referral of patients
to a medical oncologist — rather than treatment by
a surgeon alone — was significantly correlated with
the likelihood of receiving adjuvant chemotherapy [7].
Clinical trial accrual to Cancer and Leukemia Group
B (CALGB), National Surgical Adjuvant Breast and
Bowel Program (NSABP) and other trials increased
from essential zero to 9% of eligible patients. This
compares favorably with the 2% national average in
the US.
3.2. Impact of the program on health care professional
recruitment and retention
The RCOP has been successful in helping to recruit
and retain good physicians to rural areas. Physicians
commonly mention the increased academic linkage
and ease of referral to the academic center. These
rural doctors have noted that the concentration of
complex cancer care in the hands of a few local doc-
tors rather than many has allowed them to increase
their expertise. There has also been continued central-
9. ization of some complex procedures such as radiation
and leukemia treatment that are not feasible to per-
form at a rural center.
4. Economic analysis
Pre- and post-RCOP financial data were collected
on 1745 cancer patients treated at the participating
centers, two rural community hospitals, and MCC.
The main outcome measures were costs (estimated re-
imbursement from all sources), revenues, contribution
margins, and profit (or loss) of the program.
Key results are shown in Table 3, modified from
the full report in the Journal of Rural Health [8].
The RCOP had a positive financial impact on the
rural and academic medical center hospitals. The
RCOP was associated with an increased number of
referrals of 330% more cancer patients and 9% more
other medical/surgical patients. The MCC had in-
creased receipts of 6.2%. The rural hospitals each had
over a million dollars in new charges and over
$500 000 US new profit each year. In total, the re-
ceipts for both centers increased by 137%. Most of
this additional income was from ‘ancillary’ services
such as increased use of the computerized axial to-
mography (CAT) or magnetic resonance imaging
(MRI) scan, laboratory, and pharmacy. All patients
were treated regardless of ability to pay, and the pro-
gram generated sufficient profit to allow increased in-
digent care.
The net annual cost per patient fell from $10 233 to
$3862 ( − 62%) associated with more use of outpa-
tient services, more efficient use of resources, and the
10. shift to a less expensive locus of care. The cost for
each rural patient admitted to MCV fell by 40%,
compared to only an 2% decrease for all other cancer
patients consistent with other programs that have in-
creased coordination among providers [9].
L.J. Lyckholm et al. / Critical Re�iews in
Oncology/Hematology 40 (2001) 131 – 138134
5. Other programs
Similar results of improved clinical care process,
equal or better patient outcomes and cost savings
have been reported from the Manitoba Cancer Out-
reach Program, but final results have not yet been
published. The Manitoba Cancer Research and Treat-
ment Program was started in 1984 with similar goals
[10]. It works on a similar model of consultation with
the academic center, then all the care is delivered in
one of six regional centers. Insurance is not an issue
in Manitoba since there is a single universal payer.
However, there are limited funds for cancer and dol-
lars that can be saved by off loading to a regional
center preserve dollars for research. Distance is even
more problematic, with some centers 8 h by train,
impassible by cars, and air transport too costly. Key
rural primary care doctors and surgeons are iden-
tified, and given an initial training program followed
by yearly updates. All protocols are specified in a
central care plan, and the central hub audits dicta-
tions from the rural centers. Similar clinical results
have been obtained, with excellent clinical care and
less overall cost to the province [11]. (personal com-
munication, Harvey Schipper 1999)
11. 6. Applicability to other settings
We have not identified other similar programs that
have published their clinical and economic results.
The closest is the Centre Bernard Lyon that has
shown good adoption of clinical practice guidelines
and better clinical practice [12,13]. This program
should be applicable to other centers that serve rural,
dispersed populations. The main problems have been
sustaining the medical innovation part of the pro-
gram, and not ‘burning out’ the doctors and nurses
who must travel the distance. The continued travel
can be a major problem for health professionals.
7. Ethical issues in rural health care
The challenge is to provide high quality, affordable,
accessible care for all. In the US, the absence of a
single payer system allows exclusion of whole seg-
ments of the population. Combined with the dis-
persed poor population in rural areas, these issues
represent significant obstacles to delivery of care. In
Virginia, one third of the population is rural and
most of these people are medically underserved for
both primary and specialty care. The rural population
has more federal Medicare and state Medicaid health
insurance coverage with a low rate of reimbursement
compared to most insurance, so rural hospitals and
providers have less income than urban centers. ‘Nega-
tive marketing’ or locating services in affluent areas
so that the poor do not have access is widespread.
The ethical issues most prominent in rural health
care include justice issues, especially those involving
access to and delivery of health care, related issues of
12. medical competency, confidentiality and privacy is-
sues, and conflicts of interest related to blurring of
personal and professional boundaries. Finally, institu-
tional ethics committees at rural hospitals are evolv-
ing, but may not have the necessary elements of
expertise that are more accessible in urban centers.
7.1. Justice issues: access to and deli�ery of health care
The principle of justice calls for equitable distribu-
tion of health care resources, meaning that health
care is distributed according to need rather than to
the ability of a person to obtain it. Challenges to this
principle in the rural health care setting include geo-
graphical and financial barriers. In some rural com-
munities health care may be hours away. Nonmetro
and frontier areas possess far less physician coverage
than more urbanized areas even after controlling for
population size. For example, in 1988, the ratio of
primary care physicians per 100 000 persons for re-
Table 3
Impact of RCOP on rural and academic programs
Change (%)Post-RCOPbPre-RCOPa
330%Cancer patients from RCOP areas seen at MCC 173 743
9%75726958All patients from RCOP areas seen at MCC
Estimated receipts, MCC 6.2%$1 770 256 1 879 542
NAEstimated receipts, RCOP $2 314 516 –
137%Total estimated receipts $1 770 256 $4 194 058
−62%$3862$10 233Net annual cost per patient in the system
Inpatient admission, MCC −40%$7370$12 268
13. a Represents average values of 1988 and 1989 financial data.
b Represents average values of 1992 and 1993 financial data.
L.J. Lyckholm et al. / Critical Re�iews in
Oncology/Hematology 40 (2001) 131 – 138 135
mote rural areas was 38.2; for the more inclusive
nonmetro areas it was 51.3. In comparison, metro
areas had a ratio of 95.9 [14,15].
This problem will be compounded as more inde-
pendent community hospitals close their doors due to
the lack of funding. The poor and elderly without
access to transportation may receive little to no
health care. The traffic and complexity of urban cen-
ters may intimidate those who have always lived in
rural areas.
Financial barriers are similar to those experienced
by the poor urban population. The community, how-
ever, may actually be a positive factor in overcoming
these barriers. In a review of these issues, Purtilo and
Sorrell remarked that in times of hardship, rural com-
munity members often help those of their community
who are most financially strapped [16]. Among those
community members are the physicians, who are also
‘expected’ to contribute their services and advocacy
for the patient. Physicians are part of the community,
and ‘‘the high probability that the physician will see a
rejected patient at the drug store, Lions Club dinner,
or next PTA meeting makes saying ‘no’ practically
impossible’’ [17]. This situation may create a tremen-
dous conflict of interest between the physicians’ alle-
14. giance to their community and their hospital, which
may not have the financial resources to provide care
for indigent members of the community.
Improved access to oncology care is at the heart of
our rural cancer outreach program. Oncology care in
the rural setting is equivalent, or sometimes better, in
terms of convenience, than that in the academic medi-
cal center. The most important aspect of the program
is improving financial and geographic access to sub-
specialty care and consultation. Transportation is pro-
vided for patients who have daily radiation
treatments. Although we cannot impact direct costs
of the patients’ oncology care, reducing out-of-pocket
spending, which is significant, appears to be of great
assistance to many of the patients. Finally, by provid-
ing care close to home, we hope to offer comfort and
a greater sense of security to patients who are fright-
ened or feel threatened by the diagnosis of cancer
and the therapy they must endure.
7.2. Competency of medical care
Several issues surrounding competency of medical
care exist in the rural setting, and some are particular
to our rural outreach oncology setting. The first con-
cerns competency to provide specialty care. Many
rural areas have few primary care providers, and no
specialists. There is increasing evidence that high vol-
ume produces high quality and many rural hospitals
will always have low volume [3]. Physicians may feel
forced to provide care, including procedures which
they perform infrequently or are beyond their level of
expertise, especially if the closest large medical center
is 3 – 4 h away. Physician assistants, nurse practi-
15. tioners and other nursing personnel may also provide
care beyond their level of expertise, with minimal su-
pervision, to meet the health care needs of the rural
population.
One of our primary goals was to surmount this
problem by traveling 1 – 2 h to several rural areas to
provide oncology expertise in the form of clinics in
which we see new and returning patients on a bi-
weekly basis. During the clinic appointment, the med-
ical and radiation oncologists and nurse practitioners
perform ongoing management of established patients,
plan diagnostic and therapeutic interventions for new
patients, and counsel patients regarding palliative care
and end of life issues. We also educate the hospital
oncology nursing staff, many of whom have become
certified in oncology nursing. These specialized nurses
see patients every day and administer chemotherapy
and other treatments such as transfusions and intra-
venous fluids, and perform limited patent assessments
thus trouble shooting problems experienced by the
oncology patients.
Problems that can occur in this setting include are
lack of direct supervision on a daily basis, lack of
continuity of care, and problems related to handling
and communicating medical information between the
outreach sites and the cancer center.
Direct supervision by a specialist is obviously im-
possible 2 h away. We work closely with the primary
care physicians in the community and the patients
continue to see them regularly after diagnosis. The
community physicians are most often the first to see
and evaluate patients having problems, and will then
often call one of the oncology physicians to discuss
16. the case. If a patient is having a specific problem that
must be handled by a specialist, such as a compli-
cated neutropenic fever, or spinal cord compression,
the patient usually must be transported to our medi-
cal center. However, the patient may often be stabi-
lized and kept at the rural hospital if the primary
care physician has the support of the oncologists and
other members of the medical center faculty.
Continuity of care is an important concept in the
patient – clinician relationship. Unfortunately, we are
not always able to provide direct continuity of care
to our oncology patients because of time and sched-
ule constraints. We do the best we can by maintain-
ing a constant pool of physicians and nurses
designated for each site, detailed patient summaries
and clinic visits, so that the next physician will know
what the treatment plan and previous problems are,
and frequent use of phone calls to patients we know
are having problems.
Handling and communication of patient informa-
tion involves confidentiality issues described below,
L.J. Lyckholm et al. / Critical Re�iews in
Oncology/Hematology 40 (2001) 131 – 138136
and also involves management of large volumes of
information from multiple sites, which is extremely
challenging. Some information is critical, and elabo-
rate systems are in place to assure that the informa-
tion is noted and recorded by the site nurses and the
cancer center nurse practitioners, and that the oncol-
ogy physicians are made aware of any critical values,
17. such as abnormal CT scans or blood tests. Ongoing
quality assessment is in place to assure impeccable
data management, to avoid missing critical informa-
tion.
7.3. Confidentiality and pri�acy
The proximity in which patients and health care
workers live and work in rural communities makes it
much more likely that physicians and other health
care workers will know their patients personally and
socially, which creates significant challenges to main-
taining respect for confidentiality and patient privacy.
A 1993 survey of 510 general and family physicians
in Kansas revealed that 46% of respondents practic-
ing in a community of less than 5000 were likely to
have more than 5% of patients who were family
members or friends of the physician or staff, signifi-
cantly more than the 13% of respondents from com-
munities of more than 20 000. fourteen percent of the
physicians in the communities of less than 5000 also
reported that in more than 5% of cases medical infor-
mation is passed through the physician or staff to an
outside party who knows the patient in question [18].
Purtillo and Sorrell describe a patient who is found
to have genital herpes during a routine prenatal visit.
The patient pleads with the physician not to enter the
information in her chart: her sister-in-law is the
physician’s receptionist, the county public health clerk
to which this transmissible disease should be reported
is her cousin; other relatives work at the hospital
where she will deliver; ‘‘virtually everybody in the sit-
uation is either a relative, friend or foe’’ [16].
In an instance reported by Roberts et al., a patient
18. drove 6 h to an urban center for help with his sub-
stance abuse problems. He told the attending physi-
cian that he couldn’t go to his community clinic
because his sister worked there, and he was afraid she
would tell the whole family. The patient’s subsequent
non-compliance with the program was at least par-
tially blamed on the burdensome long distance drive
to the urban facility [17].
We have had several patients in our rural oncology
clinics that have expressed unwillingness to be treated
at the facility, because their privacy might be jeopar-
dized. The waiting rooms of these clinics are often
crowded with people who are friends, neighbors and
relatives. Because it is a specialty clinic only for pa-
tients with hematologic or oncologic problems, it is
not difficult for one to know another’s general diag-
nosis. Diagnostic tests are performed, interpreted and
transcribed by patients’ relatives and acquaintances.
The patients are given chemotherapy in one large
room and on any given day, they may find them-
selves sitting next to a neighbor, the local florist, or a
distant cousin. Several of the nurses have found
themselves treating old friends, teachers, neighbors
and relatives. This may sometimes be a comfort to
the patient. but may also be embarrassing or uncom-
fortable for both the patient and nurse.
In our rural outreach practice, we must exchange
information about patients frequently by phone and
often by fax and by email over the Internet. None of
these communication devices are entirely secure, espe-
cially the email system, but they are necessary in
communicating important patient information in a
timely and efficient manner.
19. Safeguarding confidentiality in such circumstances
is important; the Kansas physicians reported several
measures they took to do so, some of which could
potentially compromise patient care, the physician’s
integrity or even legally endanger the physician, such
as in the case of misrepresenting or omitting certain
details on insurance forms, and omitting required not-
ification of local public health officials. Other mea-
sures taken included speaking with office personnel
regarding the importance of confidentiality of a spe-
cific patient, omitting or misrepresenting certain de-
tails for the official medical record and recording the
importance of confidentiality in the chart [15].
Our outreach site staff are aware of the sensitive
nature of our patients’ conditions and maintain a
high level of awareness regarding privacy and confi-
dentiality. Simple measures such as keeping telephone
conversations and reports out of hearing distance
from the waiting room and patient rooms as well as
ongoing discussions regarding confidentiality between
nursing staff and outreach staff are highly effective.
The nursing and secretarial staff maintains a high
level of professionalism and respect for patients, and
in particular, confidentiality, which sets the tone for
the rest of the staff.
7.4. Institutional ethics committees
In response to the mounting complexity and num-
ber of clinical ethical issues encountered in healthcare,
institutional ethics committees are developing in rural
and urban hospitals. Some have the specific goals of
developing and overseeing hospital policies, to re-
spond to the requirements of the JCAHO and similar
20. organizations, and others have multiple goals, includ-
ing the former as well as addressing day-to-day
dilemmas that arise in the course of patient care.
They are as heterogeneous in their compositions as in
L.J. Lyckholm et al. / Critical Re�iews in
Oncology/Hematology 40 (2001) 131 – 138 137
their goals and missions, some composed of physi-
cians and administrators, others representatives from
multiple divisions of the hospital, such as nursing,
pastoral care, and even from the community. Their
members have various levels of ethics knowledge and
expertise. Some have support from local institutions
that have established ethics committees and consider-
able expertise. Others have members who have taken
additional training in bioethics at community or uni-
versity programs.
The hospital ethics committee can be a tremendous
source of knowledge and support for physicians and
other health care providers confronted by the dilem-
mas listed above. It is critical that these committees
have the expertise and influence to support and up-
hold behavior and policy based on ethical principles.
The development of such committees has been de-
scribed as occurring in three stages: emergence of a
local expert, educating the ethics committee and de-
veloping a body of knowledge, and expansion of the
ethics activity into policy development and consulta-
tion [19].
In our rural cancer outreach programs, we have
21. offered the expertise of our established and experi-
enced hospital ethics committee and its members, as
well as persuaded them to identify interested individu-
als for further training by the Richmond Community
Bioethics Consortium. We have also given several lec-
tures and held discussions related to ethical issues in
the care of oncology patients to the nursing and med-
ical staff. We will continue to support them in any
way possible to guarantee ethical treatment of their
patients and employees.
8. Conclusions
There are distinct and novel ethical issues in
providing rural health care. Two groups have shown
that rural cancer outreach (a structured alliance of a
cancer center and rural hospitals and providers)
works well clinically and economically. In addition,
rural cancer outreach is ethical because it is distribu-
tive and just.
Reviewers
Dr Dieter K. Hossfeld, Universitäts-Krankenhaus
Eppendorf, Medizinische Klinik, Abteilung Onkologie
und Hämatologie, Martinistrasse 52, D-20246 Ham-
burg, Germany.
Dr Leslie R. Laufman, Hematology/Oncology Consul-
tants, Inc., 8100 Ravines Edge Ct., Columbus, OH,
43235-5436, USA.
Acknowledgements
We gratefully acknowledge grant support from the
Jessie Ball duPont Fund, 225 Water Street, Jack-
22. sonville, Florida, USA
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Biographies
Laurie Lycholm, M.D., is director of the ethics pro-
gram for the medical school. She also has active roles
as a traveling physician with the Cancer Out- reach
programand as a member of the Brain Tumor Multi-
disciplinary Clinic.
25. Mary Helen Hackney, M.D., is the director of Rural
Cancer Outreach Program and travels regularly to
rural clinics. She is also part of the Breast Health
Center and is involved in patient and physician edu-
cation about breast cancer.
Tom Smith, M.D., is recognized nationally and inter-
nationally for his papers on health services research.
He is currently the director of the ASCO curriculum
on palliative care and has focused his research on
palliative care topics. He is a Project on Death in
America Scholar.
.
